CEREBELLAR ATROPHY AND ALEX

SYMPTOMS The most characteristic symptom of cerebellar degeneration is a wide-legged, unsteady, lurching walk, usually accompanied by a back and forth tremor in the trunk of the body. Other symptoms include slow, unsteady and jerky movement of the arms or legs, slowed and slurred speech, and nystagmus — rapid, small movements of the eyes.
WHAT IS IT?
Cerebellar degeneration is a disease process in which neurons in the cerebellum – the area of the brain that controls muscle coordination and balance – deteriorate and die. Diseases that cause cerebellar degeneration can also involve areas of the brain that connect the cerebellum to the spinal cord, such as the medulla oblongata, the cerebral cortex, and the brain stem. Cerebellar degeneration is most often the result of inherited genetic mutations that alter the normal production of specific proteins that are necessary for the survival of neurons.
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The severe pain that Alex experiences is not usually a condition associated with Cerebellar Atrophy. We do not know , and doctors can not pinpoint why he is having such pain. He does have the issue of migraine, but that pain is differentiated from the constant pain that is unrelenting.
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Alex was the easiest to raise of my 3 boys. This was due to his pleasant disposition and eagerness to please. He enjoyed reading and never minded playing alone. He could entertain himself for hours. He never was as agile and quick as his brothers, and he sometimes seemed a little clumsy, but there was never any noticeable problem that would cause any concern. He began having migraines at about age 4, and we found that his vision was very poor and he was wearing glasses at age 5. There was some concern, I remember, that the doctors were unable to properly correct his vision to 20/20 with glasses, but they did not seem too concerned about that.
One day, when he was in the 8th grade, one of his teachers called me and said I needed to come to the school and pick up Alex. She said that he was bumping into things and said he was seeing double. He was not complaining at all when he went to school. I picked him up and went directly to his pediatrician, who sent us straight to the hospital for a CT scan. Nothing showed up. The next day we were in Birmingham, at Children’s hospital for an MRI. This is when the damage showed up. The doctor said that part of his cerebellum was gone. He said he must have had a severe infection or virus to cause it. Then he sent us home. Nothing else…just…go home. We did, and the next morning I was back in the pediatrician’s office…asking “what now?” He could not walk with out aide and could not see because of double vision. Our Dr. here sent us back to Birmingham. We went first to a pediatric opthamologists, who fixed prisms for his glasses so he could see better. Then, we went back to CHA, and saw a different neurologist who explained a little about the process of cerebellar degeneration or atrophy. He gave us a medicine to try to help alleviate the symptoms, but it did not help.

This was the beginning of our nightmare. Our doctor here found the leading specialist in Cerebellar Atrophy, and sent us to see him. He was at the University of Michigan. We found out the most info here. They did a battery of tests here that told us more of what we were dealing with. We learned what to look for and what to expect. We were told that the disease could progress, or could stop where it was. It could go into remission for a while, only to start up again later. But, no treatment.

At first, Alex was able to continue with school, but soon the pain began to get so bad, he could not keep up. He tired easily and there was another problem with his eyes. He began having nystagmus, which is a constant jumping of the eye. He began having trouble seeing and reading.

We went to a pediatric pain specialist in Boston, who came highly recommended. He did many tests and finally told Alex there was nothing he could do. When Alex mentioned how bad his eyes were, he suggested we see a friend of his who happened to be an opthamologist. We went the next day, and for the first time, he and his associate were able to make some glasses that enabled Alex to have decent vision again. He said he had only seen this kind of nystagmus one other time in his practice. It is extremely rare.

We saw a doctor at the University of Mississippi who is a researcher into cerebellar atrophy. He began testing Alex for all the differing causes of the condition. Every test turned up negative. This led him to believe that we were not dealing with an inherited type, but just a gene mutation. Not that that is any better. We still do not know why or what the exact cause is.

So, our life consists of Alex seeing a pain management specialist who tries to keep him comfortable with narcotics. If we hear of any possibility of treatment, we seek it out. We have gone to doctors all across this country. But, no one knows enough to help. They all send us away, and can do nothing. But, still we search, and we will continue to search. We will continue to track down every lead. And, Lord willing, we will find some help for him.

As a matter of clarification…it is the severe pain that keeps Alex totally homebound. Even though he has to walk with the aide of a cane, he is not handicapped by this enough to be a shut in. He would love to further his education, he would love to be able to just get out and go to the bookstore. He is incapacitated by the level of pain that he faces everyday…unrelenting and constant.

We pray…we deal daily…we wait on God.

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1 Comment

  1. First off I would like to say fantastic blog! I had
    a quick question that I’d like to ask if you don’t mind.
    I was curious to find out how you center yourself and clear your head prior to writing.
    I have had difficulty clearing my thoughts in getting my ideas out.

    I do enjoy writing but it just seems like the first 10 to 15 minutes are generally wasted simply just trying to
    figure out how to begin. Any recommendations or hints?

    Many thanks!

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